In July 2011, 5-year-old Joseph Burken was on vacation in Chicago with his family when he began to complain of a headache. At first, his parents, Julie and Wade, thought he had the flu after a tiring weekend.
But when Joseph’s headaches worsened and he was throwing up and having trouble staying awake, they took him to a nearby emergency room. Joseph’s blood tests came back normal, so the emergency department doctor did a CT scan of Joseph’s brain. The results were shocking.
Joseph was diagnosed with an astrocytoma, a cancerous tumor in the center of his brain. He also had hydrocephalus—a buildup of fluid inside the skull that leads to brain swelling.
“You think you’ll have Christmas next year with them or you’ll have the next birthday,” Julie says. “He was so nonresponsive when we got to the ER, I just wanted to see his eyes again and have him talk to me.”
Joseph stayed in Chicago for 10 days while doctors drained the fluid from his brain. He was then transferred to University of Iowa Stead Family Children’s Hospital, where a care team had already been consulted and was ready to help.
“It was kind of like drinking water from a fire hose—it was a lot of information to take in, a lot of drugs, a lot of medications,” remembers Julie.
Joseph underwent nine rounds of chemotherapy with daily and weekly medications. During his times in the hospital, Joseph and his siblings Javier, Molly, and Jack benefitted from the resources and support provided by Child Life and UI Dance Marathon volunteers, including hospital activities and family events.
Since Joseph’s astrocytoma is a slow-growing tumor, the goal of chemotherapy is not to eliminate the tumor, but to minimize its growth. Throughout treatment, Joseph’s tumor remained stable. Remarkably, since his treatment ended in October 2012, the tumor has shrunken measurably.
Pediatric cancer specialist M. Sue O’Dorisio, MD, PhD, has been a key member of Joseph’s care team.
“We’ve been completely blown away by the quality of the medical staff,” says Julie. “They told us that first day, ‘You’re part of this health care team. If you don’t like something, talk to us. If you want to try something different, talk to us.’ And we found that to be true.”
Now 8, Joseph advocates for other pediatric cancer patients by raising awareness and funds for pediatric cancer research. He even recruited O’Dorisio to speak at fundraising events and to shave her head in support.
Joseph has also inspired those around him. When he learned one of his father’s co-workers had a grandson diagnosed with cancer, Joseph wrote him a book: “I Had Cancer, Too by Joseph Burken Age 6.”
Pages of Joseph’s book include sentences like “I had surgery” and “I had to take pills,” along with hand-drawn pictures. But the last page speaks volumes to Joseph’s upbeat and positive attitude: “I played a lot.”
“We’ve just been blown away by his strength,” says Julie. “He never stopped enjoying life.”